Living with FAP: Update from Steph

Monday, December 3, 2007

Update from Steph

Hello, All...

I just wanted to send out a quick email to let you know how I'm progressing. I'm finally able to sleep for extended periods of time although my concept of time is still way off...20 minutes vs 8hrs...it's all the same to me.

I've been up & around & walking since the night of surgery (Friday night) & am feeling a lot less foggy & a lot more clear-headed. My pancreatic enzymes are continuing to come down, & I haven't asked for Benadryl for the itching in about 3 dose periods. We'll see what my levels are at when the "team" comes to check on me this morning. I would really, really, really like to eat "real" food but would be just as happy to eat some pudding or mashed potatoes!!

My mouth is quite dry...I am beginning to think that a desert has more moisture in it than my mouth! (I also really do not like typing on Matt's laptop!)

This hospital is just amazing, & it's quite a privilege to be recovering in the Marburg Pavillion...They have fresh coffee, juice, tea, etc for family members. Yesterday, the guest coordinator was making fresh fruit smoothies. There's also finger sandwiches & fresh cookies (Maybe now that I'm not requiring as much attention my poor overworked & underthanked hubby can enjoy it.) The bathroom in my hospital suite is stocked with L'Occitane products. The bottled water distributed to family members is Evian & Perrier. This part of the experience is more like a hotel instead of a hospital...another blessing from God b/c of my doctor. He's done so much to improve the Whipple procedure (aka pancreatic duodenectomy) that he just tells the hospital what he wants for his patients, & they get it. I can't remember what the exact mortality rate is for the procedure (somewhere around 50%), but his personal rate is 1%, & he has helped the state of MD to lower theirs to 12%. Anyone in the medical field in this area knows who Dr Cameron is & has nothing but nice things to say about him.

I haven't had an NG (naso-gastro) tube this whole time b/c they couldn't get it down my nose in the OR...kind of strange since I've had them before; however, I am praising God for being spared from this experience.

Well, I'm going back to sleep...I enjoyed my stroll around the floor with Matt but should probably get more rest to heal & recover. The kids have enjoyed their time with their Gram (Matt's mom), but she'll be leaving in the morning to go back home...pray for the kids as they get adjusted to staying with the Nagy family (& vice-versa). Hopefully, my next email will included news about actually eating something real & not just ice chips.

Thank you for your continued prayers & emails of encouragement & support.

Love,
Steph

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Eating with a J-pouch

OK, I am not a trained expert in the area of diet & nutrition; however, I do know what I have learned from experience. Most of your dietary adjustments will come from trial & error. When you eat something, pay attention to whether or not you have bathroom issues after eating it. If the item causes any problems, then avoid it next time, eat it in moderation, or just know that when you eat it, you can expect to spend a lot of time in the bathroom. Sometimes, it just depends on how much you want to eat something that will determine if it's worth the price you'll pay later.

Also, remember that everyone is different. Just because something works for me doesn't mean that it will work for you. I know people who say anyone with a j-pouch should stay away from nuts; however, I can eat them & have no problem.

Foods That May Cause Problems with a J-pouch

Chopped (frozen) spinach: It causes the same problems as shredded lettuce. It's weird because fresh raw spinach works like a charm.
Crushed pineapple: I don't know what it is, but I have to make sure I eat this in moderation.
Items high in fat like whole milk & Oreo cookies go through you very quickly & you'll be spending some extended time in the bathroom.
Lettuce, especially if it's shredded, causes lots of problems...maybe it's too much roughage. Raw fresh spinach is the perfect substitute because it causes a lot less problems & is healthier to eat!
Watermelon: It's just too fiberous & bulky. It's a shame too, because I really like watermelon & so do my children, but I don't get it very often because I just can't eat it (not even in moderation), & it's just too tempting when it's in the house.

Healing a Sore Bum

Colon surgery brings many changes…especially in the areas of diet and BMs. Depending on what you eat and how your adjusted plumbing reacts to various foods, you may be spending a lot of time in the bathroom which leads to a very sore bottom. This is due to frequency of going as well as to not having the colon available to absorb the digestive juices. Instead, the digestive juices (along with the rest of our output) come in direct contact with the skin on your bottom…skin that was not designed to handle the acid. In time, things will adjust and get better. Your body will handle foods better. You’ll learn which foods cause problems so you can avoid them. Your pouch will expand which will require fewer trips to the bathroom. Your small intestines will start to absorb some of the digestive juices. The skin around your bottom will also toughen up a little. Bottom line is that what you’re going through right now will not last forever. Don’t get me wrong…things will never be “normal” again, but they also won’t stay this “bad” forever.

If you're having an especially bad day (or days) & find yourself spending a lot of time in the bathroom, here are some tips to help with a sore bottom:

Peri-anal bottle: This is a squirt bottle usually given to women after having an episiotomy, but it’s also used for other things. If you had an ileostomy, you should have received one to empty out your bag. This is an important item to have readily available in the bathroom. Fill it with very, very warm water…as hot as you can handle on your skin. As you potty, use it to squirt the water onto your bottom in order to get the digestive acid off your bottom as soon as possible…BEFORE the “rage” begins.

Balneol: This is an over-the-counter peri-anal cleansing lotion that neutralizes the acid on your bottom. Even if you are using the peri-anal bottle to squirt as you go, some acid will remain on your skin, but Balneol neutralizes it. You can get Balneol from most drug stores (like Walgreens & CVS), but sometimes, you may have to ask for it at the pharmacy counter. Some places, like CVS, even have their own version of it for $1 cheaper than the name brand. Either one will do the trick. You can apply a drop or 2 to your TP after you are finished pottying and wipe it on your bottom to neutralize any acid that’s leftover from the peri-bottle. For more information, check it out at www.balneol.com.

Calmoseptine: You should also have a GOOD barrier cream. Calmoseptine works way better than using Desitin or even Boudreaux's Butt Paste (which is an amazing diaper rash ointment). It is camphor-based cream that works as both a healing agent as well as a barrier on your skin. It can be purchased in both a tube and a tub (I prefer the tub) and is available over-the-counter, but you may have to ask for it. I must admit that it’s a little on the expensive side but so well worth the price! You can learn more about it at www.calmoseptineointment.com.

Soft TP: I think this is pretty self-explanatory...your bottom will thank you for it.

Other helpful tips: In the beginning, you may want to air dry your bottom after using the bathroom…it will get very sore from chronic use. Another thing that helps is to soak in a tub of warm-hot water…as hot as you are able to sit in. When you’re done, you can also use a hair dryer on the cool setting to dry your skin. Once it’s dry, be sure to apply Calmoseptine to the skin.